New to PMR

[Artwatercolour]

I have recently been told by GP that I have PMR. Trying to get appointment with rheumatologist but they are booked months ahead. I started with 25mg prednisone and have reduced to 6.25 over less than a month. No pain. Fatigue yes must rest in arvo if I do things in morn. Planning on reducing down gradually even more as this drug has HORRIBLE side effects. Have the help of Naturopath with vitamins B and E supplements and PEA Natural pain relief from compound chemist. THE PEA is wonderful. All natural. Can’t believe how tired and brain fog I was in the beginning better now but still tire easily. Anyone else experience this?

[PMRpro Ambassador]

I don't think you need to tell most of us about pred side effects - but equally, most of us can tell you how to deal with them. Almost all pred side effects are manageable or even can be avoided altogether when you know how. Tell us what YOURS were and someone will offer suggestions.

Not quite sure how you can say the PEA has been wonderful when you are also on pred - it also has an amazing effect on PMR pain!

[Artwatercolour in reply to PMRpro]

I find the PEA helps with the fatigue and unwell feeling. The prednisone side affects that I don’t want are increased blood pressure- moon face and other swelling - bones become brittle - and the list goes on. Steroids do horrible things to the body. I have not experienced any of these yet except increased heart beat at times. So any helpful ideas are most appropriated. And thanks for your reply.

[PMRpro Ambassador in reply to Artwatercolour]

I have experienced none of those either - no moonface, fair enough, some weight gain but that has gone, my bone density hadn't changed in over 7 years on pred. Pred side effects are not inevitable.

The place to start is cutting carbs, especially simple and processed carbs and all added sugar. You will also find that reduces the risk of developing steroid-induced diabetes. It is also somewhat antiinflammatory and many of us find they notice when they stray from low carb, especially eating grains.

[Yellowbluebell]

I am amazed that if you have pmr you have managed to taper so fast in a month. Pred has side effects yes but all are manageable and to be honest i would rather have the side effects than the pmr pain i was in before pred. EVERY single one of us has had brain fog and tiredness. YBB

[SnazzyD]

You have done extraordinarily well to get down to 6.25 with no pain. Do be cautious though and don’t be tempted to tough it out if the pain starts to return just because you dislike the side effects. Although pain relief is people’s main goal it is only half the story. The Pred is a powerful anti-inflammatory drug which is stopping the autoimmune process’s damaging effects plus possible progression to GCA. Re the side effects, as PMRPro asks, what are they and we can advise; they aren’t all inevitable. The symptoms of fatigue are likely the autoimmune illness where your body is attacking itself which will continue with varying degrees of activity until it burns out which is usually long term rather than a few weeks.

[Artwatercolour in reply to SnazzyD]

Thank you for your response- I’m just so afraid of what I read about the side effects

[SnazzyD in reply to Artwatercolour]

I can understand but this is the case with any drug so it is a trade off between the risk of not taking steroids and possible side effects many of which you can modify or manage. One has to read them, then make plans for the ones you can affect and then park it because you won’t get all of them. At low doses it is even less likely. Even some natural support can have its drawbacks and risks. So, think about what you have today and then decide what risks you are reducing by taking them. Every doctor I’ve seen has been scared of Pred but none of them knew how to advise; they just saw it as inevitable.

[Artwatercolour in reply to SnazzyD]

Thanks for your words of wisdom

[PMRpro Ambassador in reply to Artwatercolour]

I'm not denying there are side effects - every medication has them. But I suffered a lot of things that are usually blamed on pred during the 5 years I had PMR and wasn't on pred.

Some research also found that the so-called side effects of pred were no more common in a population of PMR patients on pred than in an age-matched cohort of a non-pred population.

medpagetoday.org/rheumatolo...

[Hidden]

Yes, yes, yes.... fatigue and brain fog both go hand in hand with PMR. I had months where I did nothing but go from the bed to the couch.. Changing my bed linens was an all day ordeal. It does get better. I am surprised by your aggressive reduction schedule... Best of luck!

[Artwatercolour in reply to Hidden]

Thank you for your thoughtful response. It’s nice to know I’m not alone

[DorsetLady PMRGCAuk volunteer]

Hi,

Guess you’re from the Antipodes maybe? Would be good if you could put a bit more on profile so we know - thanks.

As others have said, very fast reduction ....and you need to ease up now.

Early brain fog and fatigue was due to both PMR and Pred, but fatigue is still normal.

The medication is only controlling the inflammation caused by your illness, but it’s doing nothing for the illness itself - so you need to learn to pace yourself.

Don’t need to do everything in the morning, every morning - pace your activities during the day. .....but a rest in the afternoon does no harm.

[Artwatercolour in reply to DorsetLady]

Yes I live in Australia. Thanks for your response- gives hope

[Arflane97G]

Tiredness not so bad now as at the beginning but comes b ack in the first week or so after I taper (now on 4.5 mg and plan to reduce 0.5 mg a month] so I revert to having an afternoon nap, less traffic so I can hear the birds and is a lovely restful time. Well done for the reduction. Pred has helped enormously but I now take 5 other pills - vitamins, collagen, fish oil- to combat the effects. Take care

[DorsetLady PMRGCAuk volunteer in reply to Arflane97G]

A slower taper may reduce the tiredness after the reduction - that was one of the reasons it was devised - healthunlocked.com/pmrgcauk...

[Artwatercolour]

Thanks

[Kaaswinkel72]

Am I the only one that has no idea what PEA is?? Other then green round beans.....

And: my experience is that the help you get from the rheumatologist depends a lot on the person you get: some are helpful and knowledgeable, and supportive, others are let s say the opposite. So don t worry about you having to wait for that consultation......What you get from this forum is much more: knowledge, support, wisdom and solidarity all delivered with a smile! All the very best and don t worry too much about the side effects of the prednisone, prednisone is the only medication which helps PMR, so I say “ thank you prednisone” and do what I can to get as fit and strong as I can, considering the pain and circumstances. Succes, succes👍🌞

[Artwatercolour in reply to Kaaswinkel72]

PEA is a natural pain reliever obtained from a compounding chemist. Palmitoylethanolamide 300 mg

[Kaaswinkel72 in reply to Artwatercolour]

Thanks so much👍

[Artwatercolour in reply to Artwatercolour]

Actually I’m finding the PEA helps with fatigue. I take 2 morn 2 lunch and 2 eve. Can take more if needed it’s natural so no side affects

[moorfield in reply to Artwatercolour]

Yes thank you for info on PEA.

Also I agree with slow tapering as it's taken me a year to get to 6mg which isn't enough so back to 7.5mg.which seems about right . Will do that for 2 moths then reduce 0.5mg per month....or that is the planguage.

Looking back on the first 3 months ...it was grim...Bed

..sofa....meal....bed...sofa...meal.etc

Think my whole mind and body went into shock as I am usually fit and active.

So nice to have this network of support...Thank you everyone.

[Artwatercolour in reply to moorfield]

So how long have you had PMR? And has the fatigue gone now or less!

[moorfield in reply to moorfield]

I am 12months into PMR diagnosis and treatment ( but looking back had pre symptoms of fatigue coming on 6 months prior to this). And yes still get very fatigued but it is less. Still unable to do any form of exercise other than daily walking and just introduced very gentle cycling or swim once or twice a week if I have the energy. I can get away with flat cycling for about 4 miles - used to do 40-50miles at the weekend . Even so I am enjoying my short cycles as it keeps me sane!

[lalabirdy in reply to Artwatercolour]

Thank you for this PEA information, I’m also in Australia. I started October, 2019, for PMR, 56 years old, 25mg Prednisolone and have tapered to 5mg. There is stiffness in my legs as the amount has decreased but not the pain I was experiencing last year.

If the pain returns I will choose to increase the dosage and accept the side effects. I am about to try acupuncture. Best wishes to you and take care at this time. 🏡

[dancersize2]

I'm also in Oz and I'd never heard of PEA. 25 was a high start (I think most start at 15 for just PMR) but the drop was also very quick. I guess you haven't reached the dose that is needed to control the inflammation. I'd suggest slow down now.

[Artwatercolour in reply to dancersize2]

Thanks that’s what I will do. How long did you stay on a dose before going lower?

[dancersize2 in reply to Artwatercolour]

From 10mg to 6mg I tapered 1/2mg a month.. Was stuck on 6 from July 18 to Dec 18 When I tried to go lower, pain returned so I'd go up again. Rheumy added methotextrate and I was able to taper 1/2 mg month. Made it to 2mg by Dec 19. Have now got down to 1mg mostly but guided by how I feel. I have been able to continue dancing for exercise and social activity until this corona virus has shut things down. Rheumy visits now only 6 monthly but blood tests 3 monthly.

I have found three other people locally through groups I'm in who have been diagnosed with PMR although I'd never heard of it before diagnosis.

This group is a great source of information and help.

[Artwatercolour in reply to dancersize2]

Yes I agree never heard of it before but now I know 2 who have had it

[dancersize2 in reply to Artwatercolour]

I'm in central Vic. Where are you?

[Artwatercolour in reply to dancersize2]

I live in NSW

[PMRCanada]

Welcome to the forum. As mentioned your taper has been incredibly fast...so please do consider either smaller drops, or tapering over a longer period of time, or BOTH.

I’ve been on pred for almost 2 years. I’ve lost 30 pounds (by following a low carb/sugar/salt eating plan), I’m more active than pre-PMR, no longer taking medication for high blood pressure either. Pred has helped me remain pain free, which allows for physical activity (deep water exercises, walking, golf, badminton, dancing).

I’ve had a few side effects, but all are certainly manageable. I tend to sweat at the nape of my neck around 5am-7am when my dose comes on board, I’ve also got thinner skin that bruises easily, and my hair has thinned a bit and changed in texture. A small price to pay for what pred does to address my PMR.

I understand how frightening side effects sound, I only agreed on a 7-day sample pack when I was first diagnosed, and it took my GP and hubby doing lots of convincing to even try pred. What I’ve learned is not everyone gets all the side effects, and at your current level, you’ll not likely have these emerge. If you get to 5mg, it is considered much safer...no need to race to “0”, unless you want to trigger a flare.

Try to not stress about your medication (or anything else as this is bad for our conditions). Strike a balance of rest, activity, and support (professional or otherwise). The emotional process of accepting our fate can be just as challenging as the physical woes.

Adjustments are often required, but all of us adapt. We are here to support you and “get it” better than most others.

[Artwatercolour in reply to PMRCanada]

Thanks for sharing

[Whitner]

Hi Artwatercolour, welcome! I am 66 and I was diagnosed in October 2019. Started on 20 mg of prednisone which went dow n to 15 after a week. I am currently on 8 mg and have relatively little pain. Fatigue and sometimes sore arms are my issues but rest does help and now with our stay at home order in US the resting part is easier. Glad to hear you plan to slow down your prednisone taper 😊

[Artwatercolour in reply to Whitner]

Yes I agree the timing is probably the best